a yarn/thread/fiber loving fool with MS

Posts tagged ‘MS’

So Seriously…

The SSD process has begun again. SIGH~~~
I am in a somewhat better frame of mind that I was last time I was here. I can type without crying…..but the previous request for financial assistance still stands.
I will be starting back on the Copaxone for MS. UGH I HATE THOSE DAMN SHOTS.

I am soooooooooooo wanting to get back to D.C. RR kept me up till too late for me Sunday night txting me stuff, LOL. It was amusing.

I’m so frickin BORED and starved for conversation. Tomorrow is Wed, that means the little knitting/crocheting group will be meeting at Barnes & Nobles around 6:30. I so look forward to it.
I did some pitty party venting on facebook the other day, it has resulted in a call from one of the SCA folks offering to come and get me on Sat for a few hours. They are having a pewter pouring class, it sounds fun and will be extremely good to get out and be around others. I am a social person and this is killing me.

I honestly think the MS has gotten worse since I’ve been back.


Tis the season……yea, whatever

Thanksgiving is tomorrow.  I’m lucky to be here.  In the past year I’ve had my right kidney removed due to cancer, had the MS progress, had a weird infected cyst on my lower intestine causing another surgery along with a hysterectomy, and the MS progressing more because of the stress of all that.  When I came home from the hospital at the end of June, I was using a walker.

I’m now able to walk with a cane, fairly normal I guess.  I’ve started driving again, although not much.

I knit a lot, but don’t have much to show for it because I get bored with it and start over or just put it in a corner. And then there’s FARMVILLE, LOL.  yea right.  I play that.  What I find STUPID is that people spend real money on the thing.

It’s getting time to figure out the rest of my life.

Off to knit…..Guess what  family and friends are getting for Christmas?


I hurt.  Well to be more specific, my joints, bones, and muscles hurt.  My shoulder feels like it is sprained, guess I’ve got tendinitis.  The leg muscles are starting to ache.  Guess my body is waking up from the MS flair.  OUCH!

Got to get  out to the Tuesday night knit/crochet group.  The group is dwindling.  I have my theory as to why…..

I managed to find some pretty major mistakes in the cardigan I cast on last week.   At least I’m not that far into it that starting over will not be bad.

Years ago, probably over 10 now, when I started tatting, there was  little info or people tatting on the web.  Not anymore.  I’m glad to see it come back.  Although some folks came be rather snooty about it.  Mainly shuttle tatting VS needle tatting.  It looks the same, just a different method of execution.  I know how to do both.  I prefer needle tatting as the MS does not let my left hand hold the thread in the position of shuttle tatting for very long.   I’ve even had a shuttle snob tell me that needle tatting was not tatting at all.

I need to get better at taking close up pictures with my camera so I can post more of my tatting.

Back to my threads of sanity.

Not the same as I once was

Has been one hell of a ride since I checked in here last.  I think about what I to write when I wake up. I do, really.  Getting up in the mornings takes a while.  I have to “wake”  up the muscles, stretch, sometimes for 30 minutes before I even sit on the side of the bed.   Sit on the side of the bed for another              10 – 15 min to let the body get used to being up right, grab the cane and shuffle off to the bathroom.  Make it to the kitchen, make coffee..not living with out that… while it’s brewing, put the bed back together.  I REFUSE to get back in and lay there.  So I put my knitting/yarn/ what ever out, get the computer going..and so begins the day.

The new lesion is in the cerebellum , not a good thing..The cerebellum is responsible for coordinating movement, planning, motor activities, learning and remembering of physical skills and for some cognitive abilities. Among other things.
This is what I am going through:
# ataxia (difficulty in coordinating movements)
# tremors
# loss of balance and vertigo
# muscle weakness
# dysarthria (loss of coordination of the muscles controlling speech)
Speech is hit or miss right now.

I’ve had occupation and physical therapy out to the house..yea, yea.. There is a definite issue with the balance.  And there is strength loss.  Stairs are are hell, so doing some strength stuff.   Speech has taken a hit.

I’m on week 2 of the prednisone tapper…YUK!!  While it is helping the the MS crap, it has totally screwed my taste, my gastro, increased the edema that I already had.  OH, and the insomnia is horrible…sleep is not as screwed as it was last week thought.

I managed to get to the Bobbins & Needles groups at Barnes & Nobles Starbucks last night. One of my fab yarn buddies picked me up, we stopped by Michaels (YARN ON CLEARANCE!!)  and I got some great company.  Getting out is important..  These 4 walls get closer and closer.

Well, Appreciate the wind and blowing on you face, the clouds that are in the sky.  Even standing in the rain can be a good thing.

Okay, off to play with yarn…